What Would You Do If You Had A Horrible Disease That Doctors Could Not Cure ?



I have a horrible disease that doctors can’t cure.

It’s called Myalgic Encephalomyelitis. I have a profoundly severe form that has left me paralyzed for 9 months (and then for shorter periods), mute for longer, unable to read/use computer/listen to music for 6 years or to have any one move me, touch me or talk to me. I could not even get a wash or have bedsheets changed a lot of the time because it was too much. I’ve been totally locked in where my brain cannot make sense of the outside world and I just lay there, also unable to think, but in the most excruciating pain.

I’ve lost all quality of life for 90% of the past 20 years. At it’s worst, this disease holds you in a state near death just to keep you “alive”, without the luxury of death. When you can’t experience the world around you and are confined to bed for 14+ years, it’s very difficult to keep going, so we peeps have a LOT of suicides. And, when I say bed bound, I mean too weak for a wheelchair, or to use the toilet or sometimes even to eat/drink or do any activity of daily living. Breathing is exercise and typing is a huge feat.

If I press a computer key too hard, my hand, arm, the bilateral arm and eventually my whole body and brain can shut down. Indefinitely. There’s no recovery from the smallest exertion in ME.

For most of the day, my brain is not working; watching a movie is not taking it easy, it’s a huge activity that I can rarely do. Mostly, I must lie here doing absolutely nothing except meditation if I’m up to it.

There is no having a family, no reading books; there are no trips, there has been no going outside for 14 years. Visitors are usually too much. There is using the hour a day of bed-bound functioning to organize care, fight the system and write this answer because I think it’s important.


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